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Managing Behavioral Symptoms in Dementia: Podcast with Helen Kales

In this week's podcast we talk with Helen Kales, Professor of Psychiatry at the University of Michigan the VA Center for Clinical Management and Research.

We've spent a great deal of effort in Geriatrics describing what we shouldn't do to address behavioral symptoms in dementia: physical restraints, antipsychotics, sedating antidepressants. Helen Kales was lecturing around the country about all of these things we shouldn't do a few years back, and people would raise their hands and ask, "Well, what should we do?" She realized she needed to give caregivers tools to help.
Dr. Kales went on to develop the DICE approach to managing behavioral and psychiatric symptoms in dementia. Listen or read the full podcast to learn more! You'd be "crazy" not to! (hint: song choice).

Alex: Today from my home state of Michigan we have, and from my alma mater the University of Michigan, we have Helen Kales who is Professor of Psychiatry, Director of the Program for Positive Aging and a Research Investigator at the VA Center for Clinical Management and Research. Welcome to the GeriPal podcast, Helen.

Helen: Thank you Alex and Eric, happy to be here.

Eric: We have a really interesting subject to talk about today, managing behavioral symptoms seen in dementia, but before we do that, Helen, do you have a song for Alex to kind of lead us off with?

Helen: I do, I would like to hear, Crazy by Gnarls Barkley.

Eric: Good luck with that one Alex.

Alex: Not typically done on the acoustic guitar. Here we go. [Singing].

Helen: Alright.

Alex: You are crazy. You are crazy.

Helen: I was swaying in my chair.

Eric: I can't believe you pulled that off, Alex.

Alex: Well, it took a little bit of practice.

Helen: That was great.

Alex: And it's like you know, maybe like 2% is as good as the real song.

Helen: It was great.

Eric: So, Helen, I really am super excited to have you on this podcast because as you know, we've been working with a project with the Center to Advance Palliative Care or CAPC on teaching healthcare providers how to care for individuals with dementia and how to help their caregivers. Just a plug for that, anybody who has access to CAPC can actually look at their first three modules, but one of them was on this really common symptom that I always struggle with, which is the assessment and management of behavioral and psychological symptoms of dementia.

I did this huge kind of lit search to get ready for this module and to figure out what to put in there and the one thing that everybody talks about is the importance of the DICE module. Which I think was first developed in a JAGS paper that was published in 2014 and there was a follow up BMJ article that you wrote and then just recently in 2018, a great article on apathy also that came out in JAGS as well. I was just hoping that we could chat a little bit about how you approach behavioral and psychological symptoms in dementia. Would that be okay?

Helen: Absolutely.

Eric: Wonderful. Well maybe before we do that, how did you get interested in this as a subject?

Helen: So back in the sort of 2010 era, I was doing a lot of work in pharmaco-epidemiology and had done a lot of research looking at the risks of anti-psychotics and specifically mortality. As I went around the country giving talks I found that people would raise their hand at the end of the talk and say, "All right, well what should be do instead?" I didn't like not having an answer.

Eric: Yeah. I give a lot of talks too, and I think the one biggest frustration is you keep telling us not to use these medications and no medications work so what do I do? Like I have this caregiver in front of me who's at their wits end at home, they don't want to move this individual to a nursing home. The nursing home no longer wants to use anti-psychotics for really good reason. What do we do?

Helen: Exactly and so it was around this time that I met Laura Gitlin who's an absolute pioneer in the area of behavioral interventions and she'd done several decades worth of trials with family caregivers, but as we talked we found that a lot of those interventions never made the research to dissemination implementation gap. They never cleared it. We were thinking a lot about why and why these methods aren’t more utilized. Every expert panel always says use behavioral interventions first. If you go and look in clinical settings it's rare to really see those be implemented and especially be implemented in an evidence based way.

Alex: Can we just back up for a sec, Helen this is Alex. I'm wondering what we're talking about when we're talking about behavioral and psychiatric symptoms in dementia. Are there specifics, which are the most common and the most frustrating for patients, families and clinicians?

Helen: Sure, so I think what clinicians often think of as behavioral and psychological symptoms are those that we commonly see in people without dementia. So depression, you may see agitation specifically with certain anxiety disorders in people without dementia. You may see aggression or apathy, psychosis certainly. But when you actually ask caregivers, a lot of what they have difficulty with don't fit neatly into any of those categories and those are things like asking the same questions over and over again, maybe leaving the house, sort of exiting, wandering. It may be even things like resisting bathing and so importantly none of those things are good medication targets and so our understanding of these symptoms is they're very heterogeneous, it's a very large group of symptoms.

Eric: Yeah and the one that, I mean it's interesting because the one that frequently comes to most physicians minds I think when they're hearing about this is agitation, agitation. Thinking about how we could potentially help with that agitation, either the caregiver at home or the care givers in nursing homes. Do you see that as a frequent common problem?

Helen: So you've sort of hit a nerve with using the word agitation. I have a love hate relationship with it. I certainly use it but I liken it to, especially for internists like yourself, shortness of breath. So you know if somebody comes into a doctor and says, "I have shortness of breath." You guys are going to do a history, a physical, you're going to do labs and then you have certain algorithms that you're going to run through in your head depending on what some of those branches yield for you. I actually really think of agitation in the same way. It is not a disease, it's a symptom just like shortness of breath and it has different causes. You know the behavior looks the same but the underlying causes can be you know myriad.

Alex: So maybe we should move into talking about the general approach. First. Maybe starting off with investigating the underlying causes because I'm guessing the approach depends on the underlying cause.

Eric: Well you're jumping the gun Alex.

Alex: Am I jumping?

Eric: And this is why I really like the framework. Do you want to talk about that, the framework that you came up with?

Helen: Yeah, absolutely. So just to give you a little background on the framework, what we did was we then decided to hold this expert panel that in 2011, which included dementia care experts across the country, sort of across all the guilds including geriatric medicine, geriatric psychiatry, pharmacy, psychology, social, et cetera and we came up with the skeleton of what would become the DICE. Everybody agreed on this algorithm, should I say in terms of how they would approach a complex behavioral problem or even a not so complex behavioral problem.

So the D stands for describe. It's interesting that Alex, didn't say it first because most often skipped. So people jump to agitation but that's really not a description. So if somebody calls you with agitation, your question should be, "Well tell me more about that." Because you really don't know whether that's somebody being anxious, somebody trying to leave the home, somebody yelling, you just don't even know what the manifestation is by the use of that word. So you really want to know who was there, when was it, what happened, you know sort of antecedents, behaviors, and consequences kind of thing but also importantly is anybody at risk. Because that's going to change the metrics for you if somebody is at risk, either the person with dementia or the person’s caregiver, that's the first step.

Alex: So, the first step is to describe, and get more detail about what is actually going on here when somebody uses a generic term like agitation.

Eric: Yeah. And I really like how, when we talked, you kind of walked me through this Helen a ways back about how to think about the D and I think you told me that you like to talk to caregivers and tell them, like to hear, play it out like a movie. How did you describe it again?

Helen: That's exactly right and in our training what we do is we tell them, think about how you would describe the Wizard of Oz to somebody that had never seen it somehow. Like they're under a rock and they have never seen the Wizard of Oz. And so the agitation would be to say the witch died at the end of the movie, but if you were really gonna describe that scene, you would put a lot of detail in it. And about the flying monkeys and the castle and how the witch sets the scare crow on fire and how Dorothy throws the pale of water and then the witch screams I’m melting. That gives you a lot more detail and a person could really figure out why it was so exciting, and similarly, I think we want caregivers to give us that kind of detail about what's happening.

Eric: I also love the idea of thinking about ... so they have these behaviors, so what? What are truly the consequences. I think of wandering as something that we often see like in our nursing home. They may be perfectly fine going back and forth between their room and the front, and it is great exercise for them, and I often wonder like, okay so what? This is great exercise.

Helen: Exactly. And that's part of it is who is at risk from this and if there's really no risk I think you have the change your calculation as to how it needs to be approached.

Eric: Alright. So, first step, we're getting a really deep thorough description so the D in DICE. Next step we start antipsychotics?

Helen: No.

Alex: Is this where we roll the dice? And how many times do I roll the dice? Who did you meet in Vegas when you came up with this?

Helen: No, no. It was actually we thought, what could we, kind of like SIG-E-CAPS. What would be memorable for people, and it was originally the 4D method and nobody could figure out which D was which so that wasn’t gonna work.

Eric: Alright. So, I is not initiate anti-psychotics, what's I?

Helen: I is investigate and so just like the shortness and breath example, we would want to figure out where this particular symptom is coming from and to try and make that a little easier for people. We think about a triangle of interacting parts in dementia, which is the person with dementia, the caregiver, and the environment. And the underlying cause could be coming from any one of those places or all of them. And so we try to think about things with the person, like could it be a UTI, could it be constipation. We think about the caregiver because that's really important. When you were just using the example of wandering. That might bother some caregivers more than others. And it might bother certain caregivers because they themselves are depressed or they themselves are highly stressed. And so you what to think about those contributors to it.

Eric: So I learned a ton by talking and it made me really think is a lot of our training as internists is to focus on the patient factors in this investigation. Is it a UTI, what can we do? Maybe we can educate the patient, which is always kind of strange because this person in front of us has dementia. How much education are you gonna be able to do. And we ignore these other two huge factors which is the caregiver and the environment. And if something is gonna change it's unlikely to be the patient. It's gonna have to be their environment or the caregiver.

Helen: Well, especially for caregivers. If we think about it family caregivers get no education, no training by and large. They're given a diagnosis and they're supposed to, as you said a minute ago, soldier on. And we really can train people how to communicate better, how to use improve in certain cases. You know communication. A lot of people who aren't experienced handling dementia. They try to quiz people or confront them. Dad is dead mom, don't you realize that. Which is never effective because the person has that belief in and sort of challenging that in a way makes people more upset. And so I think teaching people simple communication techniques, not giving too many choices at once. Those kind of things. These are things that are fairly easy to do once people have the education to do it.

Eric: What are some common environmental issues that you come across?

Helen: The most common ones are related stimulation, structure, or activity. I think over or under stimulation is really common. Under simulation we see a lot in facilities where people may have nothing to look at or no activities. They may be cranked in a Geri chair and not have much to do and they, I think the response to be anxious or yell help is actually kind of understandable in those cases. In certain home settings there may be over stimulation. People may be taking them out to family gatherings or parties where there could be sort of have caregivers that are caught between taking care of grandchildren and taking care of a spouse and so there's clutter all around the house, children's toys, exer- saucers, and all that kind of thing. And so the person with dementia may need to have a time out.

Eric: Alright. So we've done D for describe, I for investigate, we got two more letters in DICE, C and E. So what does C stands for?

Helen: C stands for create and the create step is pretty much just limited by people's imagination. What we always tell caregivers is they know the person the best. So, they can come up with the best creative solutions.

Alex: You know what? Some of the creative solutions we talked about on the previous podcast, we were wondering is this ethical? Things like deception, for example putting black tiles adjacent to the elevator entrances in nursing homes so that persons with dementia think, "Oh I'm entering a yawning chasm. I don't want to fall off this cliff. I'm not gonna get on that elevator."

Eric: What do you think about deception?

Helen: I choose not to call it deception. We call it stealth.

Eric: Stealth.

Alex: Stealth. That's a good framing. Other examples that come to mind of stealth?

Helen: There’s an example we give in training where a person is arguing with another resident over a seat at the lunch table. And so, the caregiver simply moves the person's tray over to communicate that that person should move to another seat without calling it out and making it so obvious. Does that make sense?

Alex: Yeah. And in the Netherlands they'd actually sort of recreated environments, whole environments like bus stops et cetera from like 50 years ago.

Eric: I just saw one of a picture of a person driving a fake bus and two people behind them having a conversation and they go in the bus.

Alex: That's brilliant.

Eric: Is it brilliant or is it lies, Alex?

Helen: I think it’s kind. I actually think that giving people an experience that they enjoy and that helps them to pass the time in a pleasant way is something that contributes to person-centeredness.

Eric: So, we're creating plans and these plans should focus on all three of those elements, right? The patient, the caregiver and the environment or potentially include all three. Is that right?

Helen: Exactly right. So you're operationalizing what you found in the investigate stage and you want to manage of course any physical problems you find, but beyond that you want to provide support to the family, to the caregiver, work on communication skills and very importantly create tailored activities.

Alex: Tailored activities, okay. Can you say more about what you mean by tailored activities.

Helen: Yeah-

Eric: Sewing? No.

Helen: Well yes that could be one. But a lot of what we find in facilities for example is kind of one size fits all activities where it's like everybody is going to sing this song. Or we're all gonna do this craft. And what we try to tell people is by tailoring the activities to something meaningful to the person, that's the best kind of activity.

Eric: We've done D for Describe, I for Investigate, C for Create, we're a creating a plan that it's the caregiver, the patient and the environment. We're done right?

Helen: Exactly.

Eric: Nothing else?

Helen: Not yet.

Eric: Not yet. We had an E.

Helen: Well, we always want to evaluate, and that's for a couple of reasons. I think you want to evaluate because we want to have people have some wins, right? So if you don't evaluate it's easy to move on to the next thing and say, "Oh, well. They're not wandering anymore but now they're doing this." It's really important to get a sense of how what people are doing is working or not working.

Alex: Yeah. So, are there specific techniques for evaluating. Is there like a 20 point questionnaire they should be filling out or is it? How does one evaluate?

Helen: So, it can be as complicated or as simple as one would want to have it. I think the neuropsychiatric inventory, the quick version, NPIQ is one that people can do. It's the one we use in clinical settings and in our trials. But for caregivers it may just be selecting on a numeric scale on one to 10 where 10 is the worst and one is the best. Kind of marking that a few times a week in a calendar, in an appointment book, and charting progress over time.

Eric: Alright. Let's say for instance, the DICE approach. I really ... I love it especially when it comes to words like agitation, really figuring out what do you mean by agitation, investigating where it comes from. How do you deal with things like apathy, which are like ... there's no like, "Oh that was a period in time where they're apathetic," but rather it's been going on for months or years where it's much harder to describe a specific scenario in apathy. How do you approach apathy, and again I just want to put a plug for that, JAGS article that you co-published this year which I thought was absolutely fabulous.

Helen: Thank you. Well I think with apathy, there's always something about these symptoms that , I guess I'm an internal optimist, that's potentially modifiable. And if you think about people with apathy, often the trouble is in initiation. So it's hard for them to initiate an activity, but if you can help set it up for them and get them started, they'll be able to do it. So, that could be one sort of creative strategy you could use.

Eric: Great. Where do medications fit? Is there a role for the antipsychotic here?

Helen: There's a role for medications. And so in the DICE approach we have three scenarios where they're first line, one is depression that is significant either in the person is not eating and they're not functioning or they're suicidal so we do believe in the use of antidepressants, particularly in early dementia where the depression most represents that in people without dementia. We also-

Eric: Any particular antidepressant that we should consider or all about the same?

Helen: I think for the risk benefit ratio, the ones we tend to use the most are Citalopram or Escitalopram.

Eric: Yeah.

Helen: And then the other two scenarios would be psychosis with risk, and why I say with risk is because in certain scenarios like for example Lewy Body Dementia, you may have people who are hallucinating but the hallucinations are what we would call benign, they're not bothered by them.

Eric: It's that deer in the corner that they actually like seeing.

Alex: Yeah, right.

Helen: Exactly, exactly. Well, we had one gentleman who was seeing a book case with Christmas decorations. It was like a display and he loved it. And it was the family who was saying take these hallucinations away. These are terrible. But he actually found it quite pleasant so we talked to him about how these are probably transient, they'd go away after a few weeks. We don't want to increase his risk of things by adding something like an antipsychotic.

So the third case would be aggression where there's harm or risk involved. So you might say, "Well, aggression there's probably always harm or risk." But that's not really the case because sometimes the person might be a 90 pound person whose sort of swatting ineffectively. That's not really a risk.

Eric: Are there any other medications that we should think about when we are creating these plans around dementia behaviors?

Helen: Well, I'm glad you asked. We actually recently published a paper on a expert consensus panel an International Delphi consensus, in International Psycho Geriatrics. So I could tell you a little bit about that if you're interested.

Eric: That will be great.

Helen: So in that paper we looked at both meds and behavioral approaches, and the behavioral approaches were again sort of the top recommendations for medications for BPS neural and for agitation, to use that word. It was the Citalopram and analgesia were the first line in terms of medications.

Eric: Pain medications.

Alex: Yeah there was a nice study wasn't there, maybe you were a part of this I don't know where they randomized patients to receive acetaminophen in the nursing home settings and dementia behavior symptoms were reduced.

Eric: Yeah, there was on just acetaminophen. The one everybody talks about too is the one that was the pain protocol that was like 70% just got acetaminophen. But then the next step was like an Opioid and it ended weirdly enough with Pregabalin. And behaviors improved, but again the vast majority of people just got acetaminophen. Because pain is unrecognized a lot in these individuals and-

Alex: Hard to diagnose.

Eric: ... hard to diagnose, super common-

Helen: Pain is vastly underdiagnosed and if you think about it as people progress with dementia, they can't communicate to you that their shoulder hurts or their knee hurts. So I think the cool thing about that trial was that they just empirically treated people. They didn't try to discern whether they had pain or not. They did that empiric treatment and it worked.

Eric: Yeah, they included people with behavioral symptoms like agitation, but pain was not an inclusion criteria. I love that study.

Alex: It makes so much sense. You think about the high prevalence of osteoarthritis in the elderly just because they have dementia doesn't mean they've forgotten they have pain.

Helen: Absolutely.

Eric: Didn't Alex, didn’t you write a paper about how arthritis is one of the-

Alex: More common. That was at the end of life.

Eric: That was at the end of life.

Helen: But it's very common. I always think about a patient I had. Came in with a caregiver and she said “Dad is just ornery and stubborn. He wouldn't get into the car” and as I kind of went further I examined him a little bit. He had a lot of guarding around his one shoulder and we ended up getting x-rays and he had a rotator cuff tear. And it was just astounding that she was kind of attributing this to negative, ornery, stubbornness when in fact the gentleman was in severe pain.

Eric: I want to say a huge thank you for also talking with us today. If people want to learn more about DICE or particularly maybe get more in depth training, how do they do it?

Helen: So, there’s some very good news there. They can go to our website, programforpositiveaging.org and there we have upcoming we have a website coming out where people will be able to get trained on the DICE approach.

Eric: That's great.

Alex: We'll include a link in the GeriPal post that accompanies this podcast.

Eric: Great.

Helen: Wonderful. And we also will be putting out a manual that accompanies that training and so people can either get the manual separately or they can do the training, but we're really excited about the training because we're gonna include some little sort of e-simulation videos of behaviors in there where people can make some choices and see what happens and we're very excited about it.

Alex: And is this primarily training for clinicians, for physicians, for nurses, nurse practitioners, for caregivers, who's the target audio?

Helen: We're focusing on caregivers and those would be the family caregivers or paid caregivers, but I always like to think that we're all in the same boat with behavioral training because a lot of us in the medical field don't get trained in this in our own course of work and so it could benefit anybody I think.

Eric: And I also want to say a big thank you for helping me out as we've developed the modules for CAPCI. And also to our audience, if you're interested we have about seven modules, three are up already ranging from disclosing a diagnosis in dementia to dealing with behavioral issues, mental health issues, symptoms, end of life issues, and I'm always shocked how many people don't know that they are CAPCI members but their institution has actually paid for CAPCI so if you don't know you're a CAPCI member just trying logging in with your email account for your institution and I'll tell you, you probably are one. So, check that out. Again, Helen thank you very much. Alex-

Alex: Thank you Helen.

Eric: ... do you want to end us off with a little bit more of Crazy?

Alex: A little bit more crazy. [Singing]

Eric: That was great.

Helen: That was great.

Eric: I want to also thank all of our listeners for joining us today. We look forward to talking with you next week and also if you have a chance, do us a favor, if you're listening on iTunes or any other podcasting software, please just take a moment and rate us, and give us any feedback that you have. Ok, good bye.

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